NY Times article : In Choosing a Sperm Donor, a Roll of the Genetic Dice

Posted on May 16, 2012 by wendykr

In Choosing a Sperm Donor, a Roll of the Genetic Dice
By JACQUELINE MROZ

Sharine and Brian Kretchmar of Yukon, Okla., tried a number of medical treatments to conceive a second child. After a depressing series of failures, a doctor finally advised them to find a sperm donor.

For more than a year, the Kretchmars carefully researched sperm banks and donors. The donor they chose was a family man, a Christian like them, they were told. Most important, he had a clean bill of health. His sperm was stored at the New England Cryogenic Center in Boston, and according to the laboratory’s Web site, all donors there were tested for various genetic conditions.

So the Kretchmars took a deep breath and jumped in. After artificial insemination, Mrs. Kretchmar became pregnant, and in April 2010 she gave birth to a boy they named Jaxon.

But the baby failed to have a bowel movement in the first day or so after birth, a sign to doctors that something was wrong. Eventually Jaxon was rushed to surgery. Doctors returned with terrible news for the Kretchmars: Their baby appeared to have cystic fibrosis.

“We were pretty much devastated,” said Mrs. Kretchmar, 33, who works as a nurse. “At first, we weren’t convinced it was cystic fibrosis, because we knew the donor had been tested for the disease. We thought it had to be something different.”

But genetic testing showed that Jaxon did carry the genes for cystic fibrosis. Mrs. Kretchmar had no idea she was a carrier, but was shocked to discover that so, too, was the Kretchmars’ donor. His sperm, they would later discover, was decades old, originally donated at a laboratory halfway across the country and frozen ever since. Whether it was properly tested is a matter of dispute.

Sadly, the Kretchmars’ experience is not unique. In households across the country, children conceived with donated sperm are struggling with serious genetic conditions inherited from men they have never met. The illnesses include heart defects, spinal muscular atrophy and neurofibromatosis type 1, among many others.

Hundreds of cases have been documented, but it is likely there are thousands more, according to Wendy Kramer, founder of the Donor Sibling Registry, a Web site she started to help connect families with children who are offspring of the same sperm donor.

Donated eggs pose a risk as well, but the threat of genetic harm from sperm donation is arguably much greater. Sperm donors are no more likely to carry genetic diseases than anybody else, but they can father a far greater number of children: 50, 100 or even 150, each a potential inheritor of flawed genes, and each a vector for making those genes more pervasive in the general population.

The scale of the problem is only now becoming apparent with the advent of online communities like Ms. Kramer’s. “There needs to be oversight, and some regulation of the industry,” she said.It is not known how many children are born each year using sperm donors, because mothers of donor offspring are not required to report their births. By some estimates, there are more than a million children in this country conceived with donated sperm or eggs.

The Food and Drug Administration requires that sperm donors be tested for communicable diseases, but there is no federal requirement that sperm banks screen for genetic diseases. Some of the betters ones do anyway, in accordance with guidelines promulgated by organizations like the American Society for Reproductive Medicine, which encourages sperm banks to test donors for conditions like cystic fibrosis and mental retardation when there is a family history of the disease. Generally, the donor himself is tested, not his sperm.

But compliance with those guidelines is not obligatory, and genetic testing practices vary widely across the United States. Critics of the industry are calling for mandatory and consistent medical and genetic testing of all donors.

“In this day and age, when you have genetic testing available for about $200, there’s no reason sperm banks can’t provide this for clients,” said Ms. Kramer.

The fertility industry, however, has long resisted the idea.
For the Full Article:

http://tinyurl.com/csne2jk

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DSR’s Sperm Donor TV Special Nominated for a daytime Emmy!

Posted on May 9, 2012 by wendykr

The Donor Sibling Registry’s Sperm Donor Special was Emmy nominated for a “Special Class Programming” Emmy!!
To view: http://www.worldstarhiphop.com/videos/video.php?v=wshh0XTWQnc2EkQI49zg

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DSR BioNews Commentary

Posted on May 3, 2012 by wendykr

A call by the Donor Sibling Registry to stop using the figures of 30,000 -
60,000 US sperm donor births

08 May 2012

By Wendy Kramer

Wendy Kramer is director of the Donor Sibling Registry
Appeared in BioNews 655

In 1988 the Office of Technology Assessment estimated that 30,000 children were
born via donor insemination during the year 1986/87 in the US (1).

A quarter of a century – and no further research – later, ’30,000 annual births’
is still trotted out in academia, lectures and the media (2). Sometimes the
number is doubled, probably to allow for the passage of time, and occasionally a
range of 30,000 – 60,000 is deployed.

Yet so much about donor insemination has changed during this time. Using either
of the whole figures is scientifically unjustifiable, and the range is just as
flawed.

Hence, experts should not be using such patently erroneous figures. Rather, they
should be noting that there is no reliable method of assessing how many children
are conceived via donor insemination each year. They should be pointing out that
the USA has no accurate tracking or record keeping from which it is possible to
make an educated assessment.

Instead of complacently relying on outdated best guesstimate figures from more
than a generation ago, they should be demanding reliable, recent figures. They
should be voicing outrage that neither the fertility industry nor any other
entity is required to collect data or report statistics on the numbers of human
beings conceived using donor sperm. This is in stark contrast with cattle
insemination, which is much more tightly regulated and surveyed.

The donor insemination landscape has changed significantly from the 1988 report.
In 1986 almost all recipients were married; nowadays, married recipients
(excluding lesbian couples) make up a small minority. Whereas in 1986 the
majority of donors were recruited directly by fertility doctors, most donors are
now sperm bank recruits.

The number of sperm banks has rapidly increased since 1988, as has the number of
donors. But the greatest change of all is the opportunity for kinship
acquaintance. In 1988 it was essentially fantasy for donors or offspring to
think they would get to know one another. Now, in the generation following the
advent of the Donor Sibling Registry (DSR), such knowledge is almost an
expectation. Only one thing remains the same: the general lack of genetic
testing of donors or any mandatory requirement to do so.

Over the last twelve years, the DSR has collated the most comprehensive records
that currently exist in the USA. It has records of over 1600 donors, information
about tens of thousands of offspring, and details of hundreds of US sperm
distribution facilities. However, these records are very incomplete, as all have
been obtained via voluntary registration.

For several years, the DSR has been applying pressure to sperm banks for them to
maintain their own records, but progress in that direction is slow. And even if
individual sperm banks did create proper records, in order for them to be
accurate and reliable they would need to be collated and integrated with the
records of every agency that trades sperm. This would require that the whole
industry be accountable to one body.

This is a call to those quoting that one-time estimate of 30,000, and to those
concerned about the pitiful lack of oversight within the US sperm donor
industry, to speak up about the lack of reliable information within the public
domain. We need to demand that federal money be allocated to research and
regulate this industry, and to do it in a thorough and comprehensive manner.

In the meantime, everyone using these figures should acknowledge that they are
25 years out of date, and even then they were only rough guesstimates.

SOURCES & REFERENCES
1) Artificial Insemination: Practice in the United States: Summary of a 1987
Survey
Office of Technology Assessment | 1988

2) One Sperm Donor, 150 Offspring
NY Times | 05 November 2011

http://www.bionews.org.uk/page_142926.asp

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ASRM fights record keeping, tracking, and limiting numbers of offspring to one donor

Posted on March 31, 2012 by wendykr

The ASRM and SART continue to fight the ideas of donor registries, accurately tracking offspring births, and limiting the number of children born from any one donor.

News & Publications: News & Research › ASRM Bulletins

http://tinyurl.com/btogved

February 20 , 2012

by: ASRM Office of Public Affairs
Orginally published in ASRM Bulletin Volume 14, Number 13

ASRM/SART sent a letter of opposition to members of the New York House and
Senate health committees regarding problematic sperm donor legislation. AB
9039/SB 6272 would curtail the rights of patients who need a sperm donor to
build their families. The bills would limit to ten the number of offspring any
one donor can conceive and create a donor registry in the state. ASRM argued
there is no scientific evidence to support the cap at ten and referenced
existing professional guidelines while maintaining a single state based registry
would not only be ineffective, but also intrusive.

Sean Tipton of the ASRM is the contact person for this information.
Phone: 202-863-2494
Email: stipton@asrm-dc.org

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American Fertility Association Blog, and Responses

Posted on March 9, 2012 by wendykr

Read entire Blog: http://tinyurl.com/6vv9l79

Ok, this is a long one. First, please read a blog post by Stuart Bell from the American Fertility Assn. Then, replies from me and then Diane Beeson. This kind of Blog post, on a site that advises those struggling with infertility, is worrisome to me.  Stuart might be very surprised to know that thousands of folks here on the DSR do indeed define their half siblings, half sibling’s parents, donors, donor’s parents, and donor offspring as “family”.  Many of us here on the DSR have been willing to expand our view of what “family” means, and many of us have completely redefined the term since connecting with others on the site.

By Stuart Bell

I am writing in response to Iris Wachler’s recent blog entitled “Growing Concerns about Non Regulation of Donors.”  Now, let me disclose a few things:

  1. I usually really like Iris’s pieces and so appreciate her commitment to our field.
  2. I am a parent who has a child with my husband through egg donation and surrogacy.
  3. I am the co-chair of The American Fertility Association
  4. I am the co-owner of a surrogacy, egg donation, and sperm donation company.

So, with all of that said, please know that I am coming from a place of great appreciation for what Iris said—I just happen to not agree with a lot of it!

Let’s start with the first line—“I heard the term “accidental incest” for the first time last week.”  Well, that certainly is an attention grabber!  If it were on the cover of the National Enquirer I am sure we would all pick it up.  But, is this really a big problem in the world? Is it really something that geneticists are concerned about?  The answer is no.

First of all, let’s deal with the genetics issue.  I spoke with Dr. Mark Hughes, a world-renowned geneticist, several years ago at a donor conference and asked him if it would pose a health concern if two people who were genetically ½ related were to have offspring.  His answer was that for most of the developed world consanguinity does not pose any increased likelihood of health concerns or genetic related disorders for the offspring.  I loved it when he laughed and said that this issue was really more of an “ick” factor for society than a health factor.

Now, let’s deal with the real world implications.  Iris mentions an article that states that 150 children who were created using a single sperm donor (notice I didn’t say that he fathered them but we’ll get to more on the use of language later).  There is great concern that there will be this “accidental incest” because there are so many children out there who share his genetics.  But, there are only 150 of them and over 51,000,000 residents in the England.  So, that means that there is a 1 in 340,000 chance that this could occur.  So, do I really believe this is something to be concerned about – no.

Iris writes that the U.S. lags behind Britain, France, and Sweden by not regulating the number of offspring allowed from a single sperm donor.  These same countries also ban commercial surrogacy and severely limit compensation for donors of any type.  As someone who works with clients from all over Europe and the world, I can tell you that they certainly look to the U.S. as the leader in all things related to third party reproduction and do not hold their own countries attitudes and regulations in high regard at all.  In fact, those very policies are the main reason that they are forced to come to the United States for treatment instead of being able to receive it in their own home countries.

Iris goes on to discuss the ASRM guidelines currently in place and states that there is no “incentive” for clinics or sperm banks to follow these guidelines.  I thought as professionals our incentive was to “do the right thing,” which is what I have always followed.  And, all of the colleagues I know in this field are upstanding professionals who truly care about their patients and the children involved.  Sperm banks are not the enemy of the patient.  They are providing an invaluable service that has helped thousands of families realize their dreams.

Let’s talk now about the ultimate cost of regulation should we decide to adopt the model of only 10 children born from a single donor’s contributions.  While I have heard many people over the years make assertions that the sperm banks are really like real banks and are “rolling in the money,” that’s not been my experience or that of the colleagues I know in this field.

There seems to be this assumption that there is so much money being made by the sperm banks because the compensation to the donor is viewed as relatively low compared to egg donors.  But, what isn’t taken into account is the huge overhead required by sperm banks—much of it due to current FDA regulations that we are required to follow.  These expenses include extensive screening of the donors for infectious disease, materials and equipment needed to process, freeze, and ship the sperm, professional staff, rent, malpractice insurance, licenses, etc., etc.

My guess is if we adopted this 10 children rule, we would see the cost of a single vial rise 10-fold.  That’s right, we’d go from an average cost of $500 per vial to $5,000 per vial.  Given that most people doing artificial insemination (the most common use of donor sperm) need at least 6 vials to achieve a pregnancy, their cost would rise from $3,000 to $30,000.  This would make it more expensive than egg donation and would severely impact the ability of many patients to even explore this option.  Any perceived social value must always be weighed against the real detriments that regulation would create.

Now, let’s move on to one of the most common arguments that I hear about the reason to limit offspring.  It’s what I call the “what about the children” argument and it assumes that great damage is being done to these children by the fact that they may have so many people out there who share ½ of the same genetics that they do.  But, I ask, where is the real evidence of this harm?

Let me give you a couple of real world examples in my own life.  First of all, I have 3 siblings and five double-first cousins.  That’s right, my mother and her sister married two brothers.  So, genetically, I am at least as close to my cousins as a person who shares ½ genetics from a donor is to another person sharing that same ½ genetics.  But, did I ever consider my cousins to be my siblings?  No, of course not.  And, why not?  Because my parents and my cousins’ parents and society said that we were cousins and not siblings.

Another example is something I experienced this summer in Provincetown during Gay and Lesbian Family Week.  One of the events was a teen panel that featured teens from gay and lesbian parents discussing their issues and answering questions from the audience.  There were four teen girls from different families who were all born via sperm donation or egg donation.  Of the four, three stated that they had no desire to ever meet the donor or any ½ genetically related persons.  They stated that they felt absolutely no connection except to their immediate family and relatives.  They also stated that they were thankful to the donor for helping them “get life” but didn’t feel anything beyond that.  The fourth young woman stated that she had met a “half sibling” because her mother had posted on a registry of the sperm bank and that she really liked the girl but didn’t think of her as a sister, just a special friend.

I was truly amazed at the level of this conversation and the ease with how the young women discussed something that we as adults seem to have so much trouble with.  And, it makes me realize how important language is when discussing these issues.  You’ll notice when Iris uses a quote from Wendy Kramer she uses the term “sibling” not even “half-sibling.”  That is certainly Wendy’s right, and I respect her greatly for her passionate voice and work, but as a fellow parent of a child born through the assistance of a donor, I would never use that language with my own son.  What I will tell him is that there was a nice person who donated some genetic material to help him be created.  And, that there are some other people that she helped as well.  These are not his siblings and she is not his mother.  In our house a parent is someone who raises a child and a sibling is someone who relates to his or her brother or sister in that way.  (As an aside I have always thought in the adoption world that it would be great if we stopped using the term “birth mother” and started using “life giver”).

Obviously, these are challenging issues but I think that every parent has the right to determine what is best for their own family.  While psychologists can certainly give us input, ultimately they are not the ones parenting these children.  So, just as Wendy has made a very vocal attempt to use words like “sibling” and “family” to apply to these children, I will be very vocal to make sure that we introduce other words that are, in my opinion, more applicable to the issue at hand.

Another issue that I have heard from my friends and colleagues in the mental health field is that sperm donors are not fully informed that having so many offspring is a possibility.  I cannot speak for every sperm bank but I can tell you that we discuss that issue as well as do psychological screening.  What we have found anecdotally with the majority of our sperm and egg donors is that they are doing this as a medical donation and are not that interested in knowing the ultimate outcome.  I think it helps them separate the issue in their own minds that eggs and sperm by themselves are not children.  They do not think of themselves as parents and certainly don’t expect the children to either.

There are so many related issues that we could and should debate.  But, one thing that is very clear to me is that there is no research that has been done to show the impact on the children as it relates to how they relate to multiple offspring or how they feel about the donor’s role in their life.  I hope that we can work together to do a comprehensive, scientific study with a large population of teens and young adults who were born through sperm and egg donation.  This would allow us to determine what is and what isn’t important in this conversation.  Then we can decide if further self or governmental regulation is needed.

Until such a study is done, I think we should all turn the volume down a bit on this conversation as it relates to regulation as it might attempt to address a problem that may or may not really exist for the majority of families.  And, it certainly could do a great deal of harm for future parents who may be unable to pursue their own dreams of family.

Stuart Bell is the CEO of Growing Generations and is the Co-chair of the American Fertility Association.  He and his husband reside in Los Angeles with their son.

Comments

Wendy Kramer:

Really? (Term used with all due respect, just following your title).

Accidental incest “not” a problem? I invite you to come listen to the stories of random meetings amongst families that happen all the time on the DSR. These meetings take place at summer camp, at school functions, at parks, on cruises, at parties- just about anywhere.

In one group, of 75 children, there were actually two separate random meetings. Here’s one of the stories:

“we went on a cruise last week with our son. On the 2nd day of the cruise (he was stir crazy by this point) we visited the play room on the ship to keep him occupied. While we were in there playing we met a single mom with her son. We were on our way to lunch and invited them to join us. After spending about 30 minutes together, she asked which cryobank we used -we told her Fairfax -she did as well. As the conversation went on she asked us what drew us to our donor. A few things we said… his audio, education, height, religion but most of all, his childhood photo -you were called ‘the painter’ from the first time we laid eyes on you! Well, her face went pale and she said, “that’s funny, mine was painting too…” As we all sat there astonished at what was happening, we asked her the donor’s number and of course she replied, 214x!We were floored that fate would bring us together and 2 half brothers were sitting beside each other.”

And a few more, so that you get the gist:

1. “I had a similar experience with UNC Andrology. I have a 12 year old donor-conceived son. I know of one donor sibling (another 12 year old boy) whom we discovered at a potluck when the boys were 2-3 years old. “
2. “A single mom that I know from our temple has a daughter in the preschool there. Last year, for some reason, after school started, they switched her daughter from one preschool class to another. In the second class, the teachers observed that my friend’s daughter promptly bonded with one of the other little girls in class. They were frequently observed playing together, holding hands for extended periods, etc. At the parent-teacher conferences, the teachers suggested to the parents of both little girls that they arrange a playdate for the girls, as they obviously enjoyed each other’s company. During the course of the playdate, as one of moms is a single mom and the other moms are a lesbian couple, the manner in which the women became pregnant was an obvious topic of conversation. As the two mothers compared notes, they discovered that, in fact, the two little girls who had become such close friends so promptly were in fact half-sisters, having used the same sperm donor from the same sperm bank.”
3. “I also want to share how I found one more sibling. I was on a bowling league
this past fall and winter. I knew another woman had her daughter using a donor but we had never had much discussion about the issue. When our teams were bowling each other, we talked more. A few things she said caught my interest and after a bit I asked if she knew her donor number. She told me and it turns out her daughter and my son are siblings. What a small world.”
4. “I got the confirmation from the clinic today. I’m not surprised. The personalities are way too much alike for them not to be from the same donor. The 14 year old girl lives WALKING distance to my parent’s home. That was scary for me. I don’t mean the girl or the distance, but what would happen if a parent didn’t tell their children about this and it was a boy/girl relationship. Truth is always better. I’d hate for two children to end up married only to discover that they are half brothers/sisters.”

And here’s one case where a donor donated at more than one clinic (we have donors donating at up to 17 clinics on the DSR). Between 22-27% of surveyed sperm donors (this is published research) say that they donated to more than one clinic. This is extremely problematic when medical issues arise, as families and sperm banks have a hard time finding families because of a lack of accurate record keeping (sperm banks do not know how many, children are born from any one donor) as well as because the donor has a different donor number at each clinic, as there is no central registry where this is tracked or recorded:

“When our son was one, a new couple joined the mothers group with a six
month old baby boy [L] . A few weeks later, someone else in the group
remarked to my partner how alike S and L looked – when I heard about
that remark, I simply dismissed it from my mind as I didn’t agree. The
week after that, the mother of L remarked to me how beautiful she
thought our son was. I was a bit surprised that someone would go out
of their way to say that about someone else’s baby. [In retrospect, I
don't think she had any conscious idea about the connection but I
think their similarity must have triggered something unconsciously.]

A couple of months later, our group held a party attended by about
twenty couples. At some point, a small-group conversation started
about donors and the mother of L was talking about how they made their
choice of donor, based on his particular interest in music. I was
listening in and I immediately knew, as the information was so
specific, that it was the same donor. I didn’t say anything at the
time but later I telephoned L’s mothers and told them I was pretty
sure it was the same donor. We had our donor’s code. They had gone to
a different clinic and didn’t have the code – but they were able to
contact their clinic to get it – and it was the same.”

Next item: Neither myself, or the DSR uses the term “sibling” when speaking about children who are related by the same biological father. The term “half sibling” has always been used, in every interview, published piece of research, media piece and is all over the DSR’s website. Maybe you were confused and partially remembering this piece that the AFA published about my son meeting his half sister Anna?

It was interesting that both she and Ryan referred to each other as
“brother” and “sister”. We parents had been using “half brother” and
“half sister”. When we were talking about what their kids would be
to each other, I suggested “half cousins”. Anna just looked at me
and said, “No. Just cousins”.

You go on to talk about the number of offspring not mattering because most sperm donors don’t care about the outcome of their donations. First of all, many donors do indeed wish to connect with their offspring, and many have, and also wait to, on the DSR. Really? You don’t see the negative ramifications of 150 offspring for one donor? You ask, “where is the harm”? Obviously, you have never talked with the parents in these large groups. And the children are all to young to ask at this point, but we will be hearing from them within the next 5 years or so. That will be surely be interesting and enlightening for us all!

In this age of DNA testing and internet search engines, many donors are being traced. There is no such thing as 100% anonymity, and no donors should currently be promised anonymity. (Donors should also be told that they could produce more than 30, 70 or 150 children.) If you had donated, how would you feel if you were then contacted by 75 or 150 offspring? And what about the medical and psychological ramifications to the families and the children in these groups? Have you read about the groups of half siblings with medical conditions? What about the random meetings? What about those children to desire to connect with their biological father, but never will because the size of the group is too daunting for the donor to ever come forward?

And then you go on to say, “I hope that we can work together to do a comprehensive, scientific study with a large population of teens and young adults who were born through sperm and egg donation.” I invite you to read our summer 2011 published study on 751 donor offspring (note: more than half of these offspring were not DSR members). Or, please read our 2009 and 2010 published research on donor offspring that we did in collaboration with Cambridge University.

All research can be found in the DSR “Library” tab on the www.donorsiblingregistry.com website.

You say this: “But, what isn’t taken into account is the huge overhead required by sperm banks—much of it due to current FDA regulations that we are required to follow. These expenses include extensive screening of the donors for infectious disease, materials and equipment needed to process, freeze, and ship the sperm, professional staff, rent, malpractice insurance, licenses, etc., etc. “

Stuart, the FDA mandates little more than STD testing. Where are the mandates (not recommendations) for the necessary genetic testing? Why are children still being born with diseases like CF and Tay Sachs? Some banks and clinics, test some donors, for some diseases. Why wouldn’t donors receive the same testing that so many of us have had via 23andme, or some other commercial testing service? It’s less than $200. 93% of surveyed sperm donors said they would have accepted genetic screening, if it had been offered. It should also be noted that 96% of our 155 surveyed egg donors were never contacted for medical updates by their clinics, while 31% of them said that they, or close family members, did have medical issues that would be important for families to know about.

And finally, you say this: “As someone who works with clients from all over Europe and the world, I can tell you that they certainly look to the U.S. as the leader in all things related to third party reproduction and do not hold their own countries attitudes and regulations in high regard at all. “ Um Stuart, I know you talk to “clients”, but have you ever talked with the reproductive medicine authorities in the UK or Australia? How about New Zealand or Sweden? They think our system is archaic. It is quite apparent to them that the US lags far behind in updating it’s policies so that we no longer only serve the needs of the industry, the parents and the donors, but also consider what might be in the best interests of the people being created in this way.

One Australian clinician says, “Importing donor sperm is the easy option and something we thought long and hard about at Fertility Solutions” says Donati. “Once our team of nurses, scientists, doctors, and counselors had sat down and talked more about this option, it became clear that it did not fit with the clinic’s ethics on children born from donor sperm having a right to know of their biological origins when they reach the age of 18 – if not before.”

Diane Beeson:

I am a medical sociologist with no financial conflicts of interest with regard to this issue, and with a longstanding interest in new reproductive technologies and how they become integrated into family life. Having just returned from Australia and New Zealand where I met with social scientists, professionals and laypersons, some directly involved with fertility services and some not, I was struck with your statement that “clients from all over Europe and the world… look to the U.S. as the leader in all things related to third party reproduction and do not hold their own countries’ attitudes and regulations in high regard at all.” I found quite the opposite to be true. Most people I discussed these issues with, as with those from Canada and many European countries, are appalled at the crass commercialism of several aspects of the American fertility industry including the ethically weak focus on counseling and preparation we provide for raising donor-conceived children. They are particularly concerned about the lack of attention to the rights of the donor-conceived person and the effects of secrecy and deception in families using reproductive technologies. Your statement is no doubt correct if you are speaking of those clients who come to the US seeking fertility treatment. Fortunately, they do not represent the majority opinion in the countries from which they come. In the midst of their struggles with infertility it is often easy for those who desperately want children to focus on the immediate challenge and lose sight of the long-term interests of the child. It is the responsibility of health care providers to help them to see beyond their immediate distress and focus on the long-term interests of the child being created rather than to simply provide the most profitable and easy short-term technological fix. In my experience, the US approach is held in high regard only by those with shortsighted personal interests in doing so.
Diane Beeson, PhD

Many more responses can be seen here:
http://www.theafa.org/blog/growing-concerns-about-non-regulation-of-donors-really/
Posted in General Entries | Tagged , , , , , , , | 2 Comments

Legislation: Should donor offspring should have access to their genetic families?

Posted on March 3, 2012 by wendykr

This past  January, Ryan and I met with our congressman’s office to discuss possible
regulation for the reproductive medicine industry. He wrote us back this week
saying that he, “is interested in looking into ensuring that all donor-conceived
children have the right to know their biological parents when they turn 18.” And
then he said, “If a guarantee like this were to be established at the federal
level, is this something you would support?”

Um….YES!!!!

So I would like to gather input from families on why this type of
legislation would be important for donor offspring, their parents, and also for
donors. As we all know, many other countries have passed this type of
legislation, and we have always felt that it would also inevitable in this
country, as soon as the question “what is in the best interests of the child to
be born” was asked and debated publicly.

Would people email me their thoughts on a child’s right to know
their genetic, ancestral and medical backgrounds? And what about the age of 18?
(I know for my son, a much younger age would have been much more appropriate.)
Anyone care to tell their stories of connecting? Or their perspectives on
desiring contact with their unknown genetic family? Is it fair to bring a child
into the world who will have no chance of knowing about one half of their their
ancestry, their genetics or their medical backgrounds? Is it an innate human
desire to want to know where we come from, and should donor children have that
right? Should egg and sperm donors be properly educated and counseled about
what being an open donor really means?

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A New England Cryogenic Child Born with Cystic Fibrosis

Posted on February 17, 2012 by wendykr

Parents Sue Cryogenic Center Over Child’s Cystic Fibrosis

NORTH TEXAS (CBSDFW.COM) – The Kretchmar home is filled with the hum of a breathing machine and the sounds of Mario racing around a television screen watched by 22-month old Jaxon.

“MMMMaaarrrrioooo…,” he mutters under the clear mask which covers most of his tiny face. He’s yelling, but it’s hard to understand, because his voice is so muffled and his body is shaking. The shaking is a good thing. The special vest he is wearing, while he getting his breathing treatment, helps shake the congestion loose inside his little body.

Jaxon is battling cystic fibrosis. He was diagnosed just days after he was born. The new vest, breathing treatments, up to 20-pills a day. It’s all part of fighting the pulmonary disease. The disease will only get worse.

“Nobody wants to think about outliving their child, “ says Sharine Kretchmar. Sitting next to her husband, Brian, they hold hands and explain, “There is not a day that goes by that we don’t think about it.”

In 2009, the Kretchmars turned to the New England Cryogenic Center, NECC, near Boston, when they needed help conceiving Jaxon. The sperm bank’s website talks about having a “healthy baby.” It states: “No specimens are released until it has been tested” for a list of diseases including cystic fibrosis.

“We really liked what it said, “ Sharine Kretchmar thought back.

The Kretchmars chose donor N170. The questionnaire they received described him as a dad, a criminal justice major, and a Catholic man with clean family health history. The Kretchmars bought three vials of N170. And, on April 17, 2010, Jaxon was born.

But days later, doctors diagnosed Jaxon with cystic fibrosis. “His stomach hurt so bad, he would be in so much pain,” said Brian thinking back to the surgery and days that followed right after his birth.

The Kretchmars doctor wrote a letter to NECC calling this an “unexpected outcome.” The doctor cited NECC’s website and paperwork which “shows that cystic fibrosis carrier screening is performed.”

The Kretchmars had one of the remaining vials of N170 that they had purchased tested. Lab results given to CBS 11 show the man who donated the N170 vials of sperm did carry the cystic fibrosis gene. In order for a child to develop cystic fibrosis, the gene must be carried by both parents. The Kretchmars say there was no way for Jaxon to have the disease without receiving a gene from Sharine and the donor, N170.

“My first thought was I don’t know how anyone could have sold something that wasn’t tested for that.” Brian says he is still in disbelief.

NECC updated its website. It now states: “Cystic fibrosis (please note that not all donors have been tested for the same number of CF mutations. Please call and speak with an NECC customer representative to find out the specific number of mutations tested on your donor of choice).”

The Kretchmars hired Dallas Attorney Dean Gresham , who has filed suit against NECC. Gresham learned the sperm the Kretchmars bought was not donated to NECC. Donor N170 had donated to a bank in Wyoming called Rocky Mountain Cryogenics in 1993.

“NECC purchased all 10,000 vials of Rocky Mountain inventory and brought it to Boston and put in their inventory making it the largest sperm pool in the United States at the time,” says Gresham. But, “there was a problem with a lot of it.”

CBS 11 has learned that some regulators were aware of problems with N170 and other donors long before little Jaxon was conceived.

Gresham showed us documents from the New York State Department of Health where it cited a “number of deficiencies” at NECC particularly with the sperm from the Wyoming bank. In April of 2008, the New York Department of Health inspected NECC and cited that some “donors are not appropriately screened and tested.” And, some vials of semen are “not tested” for infectious diseases including syphilis and gonorrhea. The sample vials it referenced were from the Rocky Mountain Cryogenic inventory purchased by NECC.

In response to its findings, the New York Department of Health sent NECC a letter stating that it could not “distribute” sperm received from Rocky Mountain Cryogenic to the state of New York. Gresham showed CBS 11 documents he said he obtained which show NECC, internally, marked all donor sperm acquired from Rocky Mountain Cryogenic: “DO NOT SHIP TO NY.”

Sharine Kretchar now asks, “Why was it okay for my baby to get this disease but it’s not okay for a baby in another state to get it?”

As of this month, the state of New York still has a ban on shipments into New York on Rocky Mountain sperm bought by NECC. CBS 11 has also learned that New York never reported its findings to the Food and Drug Administration. The FDA is the regulatory agency for reproductive tissue banking; however, CBS 11 has also learned that the FDA has only inspected NECC once in the last five years.

“Nobody is watching over the industry,” says Wendy Kramer. Kramer runs the Donor Sibling Registry. The website connects families with genetic ties.

”We know a lot of cases where sperm banks are selling sperm that has not been properly tested.”

Kramer says the Kretchmars are not alone because sperm banks have been allowed to self-regulate for too long. “This is a highly unregulated industry. There is no oversight. Nobody is watching and it is motivated by profit.”

“I don’t ever want another mother to sit in my shoes and go through what I’ve been through if it could have been prevented and this could have been prevented.”

Infectious disease testing is mandated by the FDA. Industry standards require genetic testing and most banks claim to test for genetic disorders but it is not a legal requirement.

The FDA inspects reproductive tissue banks but there is no set law requiring when and how often those inspections must be performed. CBS 11 repeatedly asked the FDA for answers about the Kretchmar case and the NECC/Rocky Mountain Cryogenic inventory, but a spokesperson only cited rules under which the FDA regulates reproductive tissue. The agency has refused to specifically answer all questions.

Jacalyn Fallman, a spokesperson with NECC provided a statement to CBS 11:

“The New England Cryogenic Center is proud of its 30 year history of innovation and excellence in cryogenic preservation. In this capacity, we have helped thousands of families fulfill their dream of parenthood.

When screening donors, NECC does not conduct its own genetic tests, but engages outside laboratories to conduct such testing. The sperm that was purchased from Rocky Mountain Cryobank is no longer sold by NECC and is now being used for research purposes. Our thoughts are with the Kretchmar family. We are encouraged by advances in the treatment of cystic fibrosis and are hopeful that the Kretchmars will benefit from modern treatments. While we sincerely appreciate the opportunity to comment for this story, we feel that it would be inappropriate to say anything further while the litigation is ongoing. Further, maintaining the privacy of its clients and donors is a priority for NECC.”

http://dfw.cbslocal.com/2012/02/16/parents-sue-cryogenic-center-over-childs-cystic-fibrosis/

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Australian Clinics Respond to DSR’s Presentations in Melbourne

Posted on February 15, 2012 by wendykr

In December of 2011, Ryan and I made three presentations at the 14th Conference on Human Reproduction in Melbourne. Many parts of Australia have acknowledged the rights of donor offspring, and have policies in place so that offspring are able to connect with their donors and half siblings, but some still import sperm from US sperm banks that continue to use anonymous donors and have no practice in place for adequately tracking births, and updating and sharing medical information. Even the “open” donors at some US sperm banks have the option to deny contact when a child turns 18, some change their minds about contact, and some become unreachable after 18 years- there are just no guarantees here. And Australians (and those from other countries around the world that import US sperm)  who choose US donors have no way of knowing if their donor helped to produce 50 or 150 children, and if there are medical issues amongst the families or donor.

Overseas Sperm Donors – Is This What We Want Or Need?

Presentations at the 14th World Congress on Human Reproduction held recently in Melbourne were not supportive of clinics importing donor sperm from overseas sperm banks.

PRLog (Press Release) – Feb 14, 2012 -
During the 14th World Congress on Human Reproduction, Wendy Kramer of the Donor Sibling Registry in the USA (from where some of the donor sperm is imported to Australia), says that some sperm banks in the United States have treated donor families unethically, and that it is time to consider new legislation.

Ms. Kramer said, “Just as it’s happened in many other countries around the world, we need to publicly ask the questions ‘What is in the best interests of the child to be born?’ and ‘Is it fair to bring a child into the world who will have no access to knowing about one half of their genetics, medical history and ancestry?’

“These sperm banks are keeping donors anonymous and making a lot of money. But nowhere in that formula is doing what’s right for the donor families.”

Denise Donati, Director of Fertility Solutions Sunshine Coast and Bundaberg said Fertility Solutions has a strong opinion about importing donor sperm and has a clinic policy not to import from overseas. Instead, FSSC has put considerable time and money into recruiting local donors.

Donati had this to say: “At Fertility Solutions we are more focused on being able to facilitate future contact between the donor and any offspring. We do not believe that importing donor semen from overseas supports this.”

Donati said it was very clear from presentations at the recent World Congress, that donor sperm imported from overseas often did not meet the requirements as set out by the National Health and Medical Research Council (NHMRC), even if they say they do.

“Importing donor sperm is the easy option and something we thought long and hard about at Fertility Solutions” says Donati. “Once our team of nurses, scientists, doctors, and counselors had sat down and talked more about this option, it became clear that it did not fit with the clinic’s ethics on children born from donor sperm having a right to know of their biological origins when they reach the age of 18 – if not before.”

Donati said she heard Ms. Kramer present information on how “unregulated” many of the sperm banks in the USA are, despite the fact they often state otherwise. “This only confirmed my belief that Fertility Solutions was doing the right thing only recruiting and using local sperm donors,” Donati said.

Donati reports that Ms. Kramer spoke of an article in the Journal of the American Medical Association where a sperm donor who had no knowledge of an underlying heart disease had donated to a sperm bank over a 2 year period from 1990 to 1991. In 1995, he was diagnosed with a heart disease known as Hypertrophic Cardiomyopathy (HCM). The occurrence of HCM is a significant cause of sudden unexpected cardiac death in any age group. Nine of the donors twenty four children (twenty two donor kids, two with his wife) have been identified as having HCM (eight of the donor children and one of those produced with his wife). Whilst this can happen in any population, what was the most disturbing was that the authors of the paper stated that no accepted guidelines presently exist (in the USA) for the process of notification, counseling, and offspring evaluation, after a genetic disease is identified due to gamete (sperm or egg) donation (in the USA).

Ms. Kramer noted in her presentation the case of a sperm donor who reportedly has 150 children. And it seems that it doesn’t stop there with some of the donors going to other clinics to donate all over again.

“This is unacceptable” says Donati, “how can Australian clinics who are importing donor sperm be absolutely sure that the criteria set down by the NHMRC is being met. It’s not a chance that we are willing to take. The moral, ethical, and legal ramifications are significant and the impact far reaching not only to the donor, the recipients and child but also the extended families of all parties.

Donati said these reports alone should make clinics that are importing donor sperm from overseas sit up and take notice and reassess their position. “It should not be about money or ease of access but instead about looking after the welfare of all parties involved in the process, donors, recipients and offspring.

“Fertility clinics have a responsibility to all these parties and it certainly seems that there exists a seriously flawed system of donor gamete acquisition and quality surveillance in some USA sperm banks.”

http://www.prlog.org/11798274-overseas-sperm-donors-is-this-what-we-want-or-need.html

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Banning egg and sperm donor anonymity does not result in a drop of donors.

Posted on February 13, 2012 by wendykr

From a poster in the DSR’s Yahoo Group:

There are frequent comments that ending donor anonymity will automatically
result in a drop in donor numbers.

The HFEA in the UK has updated its figures to include two more years showing that the numbers of UK sperm donors have gone *up* six years in a row since the ending of anonymity, thus reversing a three year decline. The 480 sperm donors in 2010 was the highest figure since they started keeping records, and more than double the figure in 2004 just before anonymity ended. The numbers of egg donors have also gone up four years in a row, and the 1258 egg donors in 2010 was the second highest figure ever.

All new donors registered:

Year Sperm donors Egg donors
1992 375 451
1993 426 528
1994 417 732
1995 414 749
1996 419 806
1997 343 910
1998 256 943
1999 302 1,120
2000 323 1,241
2001 327 1,302
2002 288 1,174
2003 257 1,032
2004 239 1,107
2005 272 1,023
2006 303 803
2007 360 1,024
2008 405 1,167
2009 438 1,202
2010 480 1,258

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RICHARD HATCH and the DONOR SIBLING REGISTRY

Posted on February 8, 2012 by wendykr

Contributed by Rich Hatch, first winner of the tv series “Survivor”, former sperm donor and DSR member since 2005.

“Often, people say how lucky I was to have been selected to participate in the original Survivor series. Others claim I was even luckier to have won. But “luck” is an interesting concept. I’m unconvinced it had much to do with my winning, or even with my having been selected!

In support of my doubt, I would be hard-pressed to exaggerate the resistance I encountered when I was contemplating submitting my application. With rare exception, people poo-poo’d the idea. They said I’d be wasting my time. They thought it unlikely that regular-ol’-me would merit a second look. But the rational devil’s advocate in me chimed in immediately with a resounding, “Why not?” Why shouldn’t I be selected? After all, they had to select someone, and I’m a darn interestin’ fella.

Rather than luck, I attribute both my having been selected to participate and my eventual winning of Survivor to living in such a way as to wring from life all of what it has to offer… which brings me to having donated sperm during college and to the Donor Sibling Registry today.

When I first contemplated donating sperm, I took the time to consider the implications of doing so. Without knowing how my life and family might develop over the years, I imagined what it might be like to have biological offspring with whom I may never interact. I thought about the families trying, but unable to conceive on their own. I imagined what it might be like to have biological offspring who may someday seek a relationship with me. After considering all that, I made the decision to become a sperm donor. Fairfax Genetics and IVF Institute (its name then) was the sperm bank in Fairfax, Virginia, where I donated during 1986 and 1987.

My interesting and exciting life unfolded thereafter. I served in the Army and attended the United States Military Academy at West Point. I became a Big Brother and mentored a boy in my hometown. Later, I adopted a seven-year-old boy in state care and served on the Board of Directors of Adoption Rhode Island. I built a successful training and consulting firm. Eventually I went on to win the original Survivor series. Since then, I’ve been facing legal challenges I wouldn’t wish upon anyone… but I still anticipate the truth will eventually prevail, and I will be exonerated!

Over the years, I’d wondered what children may have been born and how their lives might be unfolding. I wrote to the Fairfax Genetics and IVF Institute saying I wanted to release them from their promise to keep my identity private. I also asked them for my donor number in the hopes of someday connecting with any of my offspring or their families who might want to know me. However to my utter dismay and distress, Fairfax Genetics and IVF Institute was adamant they would never release my identity to any offspring or recipients. They also denied me the right to know my own donor number.

I felt awful thinking that my offspring or their family members might be trying to find me. There appeared little, if anything, I could do to make myself accessible to any of them who might be searching. Then, in 2005, I found out about the Donor Sibling Registry. Even though I didn’t have a donor number, I immediately registered and posted. And then I waited.

In 2010, I was in Rhode Island. I received a call from a young guy in New Jersey who’d been searching the Donor Sibling Registry. When he was 12, he’d been told his donor was Swedish and 6’5” tall, but he also, had no donor number to search with. We talked about our possible connection (I’m 6’4” tall, and one of my mom’s parents had Swedish ancestry). We were both excited. He traveled by train to RI where he and I followed the instructions on a DNA test kit then mailed the swabs to the lab . Shortly thereafter, we received the results. Devin is my biological son. He’s 22, and we’re both open to whatever relationship might develop as a result of our being connected biologically.

In 2011, I got another call. My partner Emiliano (more accurately my spouse, since we married in Canada almost nine years ago, although our government refuses to recognize this) called to say we’d been contacted by a girl from Maine named Emily. This time we didn’t need DNA testing to confirm our connection, since Emily’s mom, Lisa had matched her donor’s number with Devin’s new-found donor number. Thanks again, Donor Sibling Registry!

Emi (short for Emiliano) and I spent last Christmas Eve with Emily’s family in Maine. In January 2012, Devin, Emily, and Lisa all traveled to Newport, to meet more of my family including my son, Chris, my mom, Peggy, my sisters, Kristin and Susan, and others. Though I’d been a sperm donor in Virginia, and Emily had been raised in Maine, she’d spent the last four years at Salve Regina University, just a few hundred yards down the street from my home in Newport, RI. How crazy is that?

Our fascinating stories continue to unfold. Emily’s dad passed away when she was 7 years old. Emily is interested in seeing what relationship she and I might build. Each of us have been very respectful of the lives we’ve so far been living, and we’re interested in how things might yet unfold. We learn as we go. The future is open regarding the involvement we may play in each others lives from now on, as we go forward.

I can already “hear” people thinking how lucky I am to have connected with my now-adult children. Just as I feel about most things into which I’ve put significant thought, preparation and action, I’m convinced that the connections I’ve made are less about luck and more about having made thoughtful, intelligent choices. Each decision I took was designed to produce a desired outcome.

If you’re considering joining the Donor Sibling Registry, I highly recommend you do so. Applying patience, respect and open mindedness, the connections you make will enrich your life and the lives of others with whom you may connect. The process may involve some challenges (emotional and otherwise). As someone who has been through the process, I am happy to volunteer assisting other donors, offspring, or family members who think I might help them manage expectations or contribute some insight into the process.

I wish you all, GOOD LUCK!”

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